Questions

FAQ

Why did my doctor refer me to genetics?

Geneticists specialize in determining the underlying reason for why a person has a rare condition or has an unusual presentation of a common condition. There are subspecialties within genetics. You may have been referred to genetics at Cleveland Clinic because you or a family member was diagnosed with cancer at a young age or because you have features of a genetic or inherited condition.

Your child may have been referred to genetics because of developmental delay, autism, a birth defect, a known genetic syndrome or a variety of other reasons.

Pregnant women and couples considering starting a family may be referred to genetics to find out their chances of having a healthy baby and also to discuss the testing that may be available to address any increased risk they may have for having a baby with a genetic or developmental condition.

Who are genetic counselors?

Genetic counselors are health professionals with graduate degrees and experience in the areas of medical genetics and counseling. Genetic counselors work as members of a health care team, providing information and support to families who have members with birth defects or genetic disorders and to families who may be at risk for a variety of inherited conditions.

What is involved in genetic counseling?

A review of your family history and construction of a family tree, or family health history diagram, a review of your personal medical history, a health risk assessment based on both personal and family health histories, education about specific inherited conditions, associated health risks, inheritance patterns and recurrence risks, a discussion of health risks for family members , determination of whether genetic testing is indicated and appropriate for you and/or your family members, assistance with genetic testing for at-risk family members if desired, health planning for the future, detailing available medical options for clinical screening and/or prevention to review with your primary care provider or specialist.

How do I cancel or reschedule my appointment?

Please call our Patient Service Representative at 216.636.1768 to cancel or reschedule an appointment. We ask that you provide us with as much advance notice as possible when canceling or rescheduling, as this enables us to move patients off the waiting list so that they may be seen sooner.

Is there anything I can/should do before my appointment?

Generally, it is helpful to have a record of any surgeries or medical procedures that have taken place. Also, please make arrangements for any physicians you've seen outside of Cleveland Clinic to give you copies of medical records (including test results, letters, etc.). It may be necessary to sign a medical release form. If you or your child has seen many doctors, a list of their names would be beneficial.

Also, it may be helpful for you to talk with your relatives about individuals in your family who have had a genetic or inherited condition. You should ask questions similar to the ones listed below:

Who in the family has been diagnosed with genetic condition, and how are they related to you?

What type of genetic disorder did each affected relative have (e.g. Huntington disease, Cancer, Autism, Tay-Sachs)?

Did anyone in the family have trouble conceiving or have multiple miscarriages?

At what age was each individual diagnosed with their genetic condition?

If a precise age is not known, it can be helpful to determine the approximate decade in which they were diagnosed (e.g. diagnosed in their 40s, or 70s).

Has anyone in the family had genetic testing?

How far back of my family history should I know and bring to the appointment?

Typically, we ask that you obtain medical information as far back as your grandparents and even their siblings (great aunt, great uncle, etc.) on both sides of your family, if possible. This will help better to determine the most appropriate testing options for you.

Who should I bring with me to the appointment?

If you have a spouse, family member or close friend that you would like to have with you for support, you are more than welcome to have them with you doing your evaluation. Also, if several members of your family are affected with, or are at risk for, the same condition, then it might be helpful for those individuals to accompany you to your appointment as well. However, if a family member would like to be fully evaluated, he/she will need to schedule a separate appointment.

Do I need a referral?

Our office does not require a referral in order to schedule an appointment for genetic services. However, depending on the reason for your appointment a referral may be necessary.

Also, some insurance companies require a referral before providing coverage for genetic services. Contact your insurance company to find out if a referral is necessary for coverage.

Who will I see when I come in for my appointment?

At the time of the appointment, you can ask the scheduler which genetic expert you are going to meet with during your visit. Genetic counselors will be involved in most patients' appointments and provide these services in direct partnership with your primary or managing physician, or work with several different geneticists, each of whom has various overlapping areas of expertise. Pediatric genetics patients are seen by Dr. Marvin Natowicz or Dr. Rocio Moran. Cancer genetics patients are seen by Dr. Charis Eng. Adult genetics patients may be seen by any of our geneticists, depending on the reason for the appointment. Prenatal and preconception genetics patients may be seen by Drs. Moran or Zurcher on Cleveland Clinic's main campus, or in conjunction with one of the high-risk obstetric specialists at one of the Clinic's satellite centers.

I don't live in Ohio, can you help me coordinate insurance and appointments?

Cleveland Clinic offers special services to patients traveling from out-of-state through the Medical Concierge. The services offered include assistance with coordinating appointments, helping with airline and hotel reservations (and providing discounts when available), and arranging ground transportation. The phone number is 800.223.2273 ex. 55580 and email address is medicalconcierge@ccf.org.

What will happen at my appointment?

Appointments vary depending on the reason for the visit. In general, you can expect to give a medical and family history, if this hasn't already been done over the phone. A physical exam may be necessary, especially for pediatric patients or others who are seen in our general genetics clinic. The genetic expert may talk with you about possible diagnoses or may be able to give you a definitive diagnosis. Genes, genetic syndromes, inheritance patterns, and available genetic testing may also be part of the discussion. Frequently, patients come away from a genetics visit with helpful explanations about their conditions or risks for having or passing on a condition, a sense that they have been listened to, and resources to help them get proper medical care and support. For specific information about different types of genetic services, visit our services page.

How many visits will I need?

The number of visits that you will need depends on the reason for your appointment. For pediatric consultations, it may take several visits to fully evaluate your child. For adults who are interested in genetic testing for inherited predisposition to certain cancers, at least two visits will be required. Adults coming in for preconception or prenatal counseling often come for one appointment, but sometimes more than one visit is necessary. For other types of adult visits, it will depend on your specific situation.

What is genetic testing?

Genetic testing is a type of laboratory test that looks for changes in a person’s genetic material (DNA, genes or chromosomes) or in the products that the genes make. Most times genetic testing is done by taking a blood sample, but sometimes other body samples (like cheek cells or skin) are needed. There are many genetic conditions for which there is no testing yet available. So, not everybody who comes to CPGH for genetic counseling will be able to have a genetic test. The physician and genetic counselor that you speak with during your appointment will explain if genetic testing is available or advised. For example, they will tell you how and where it is performed, who in the family is the best person to be tested first, and how long it will take to see the results. As a general rule, ALL genetic testing results are given in person during a follow-up genetic counseling session. Finally, because many genetic tests are expensive and not always covered by insurance, we recommend that each person check with his/her insurance company about coverage prior to having testing.

What is the difference between a genetic condition and an inherited condition?

A genetic condition is a disease or syndrome that is caused by a change in our genetic material (DNA, genes and chromosomes). An inherited disease is a type of genetic condition that involves genes which may be passed on from parent to child. Many genetic conditions are not usually inherited. For example, Down Syndrome is a genetic condition that typically is not inherited. In CPGH, we see people with genetic conditions that are not inherited, as well as those that are. It is our job to determine if and how a condition is inherited, and to help our patients understand these concepts.

Is genetic counseling covered under my insurance?

Many insurance companies will cover 96040, which is the CPT code for genetic counseling. However, we do ask that you check with your insurance company to verify that your plan does cover the cost. If your plan does not cover 96040, please contact us at 216.445.5686 and we can discuss the proper payment arrangements with you.

Will I have genetic testing performed?

The genetic counselor you meet with will be able to determine whether you would benefit from genetic testing. In some cases, a member of your family may be the best person to get tested. In others there may not yet be an appropriate or defined genetic test.

Can I have my blood drawn that day?

If testing is pursued, yes in most cases it can be done the same day.

Are genetic services covered under my insurance?

Many insurance companies will cover genetic services. Genetic services include several different components, such as counseling and possible testing, and we ask that you check with your insurance company to verify that your plan does cover the cost.

If your plan does not cover these components, please contact us at 216.445.5686 and we can discuss the proper payment arrangements with you.

What is your policy on confidentiality?

There are laws in place to help protect people from health and employment discrimination. All CPGH information is kept in your Cleveland Clinic chart. Records, including test results, are not given to anyone without your permission. Furthermore, none of your medical information would be given to other family members without your permission. Likewise, if you are coming in to CPGH to talk about another family member’s genetic test results, you must bring a copy of those results or have the relative call us prior to the appointment to give their consent to discuss him or her during your appointment. As required by law, we follow HIPAA regulations to keep your medical and genetics records secure.

Do you offer paternity testing?

Paternity testing compares DNA (from blood or cheek cells) from different individuals to find out if they are biologically related. The most common reason for paternity testing is to identify a child’s biological father. This testing is not performed at Cleveland Clinic, and we do not coordinate this testing. Many commercial laboratories provide accurate paternity testing. Three such labs are listed below. Cleveland Clinic is not affiliated with these laboratories and does not endorse them. They are listed only for informational purposes. For more information, contact the paternity testing labs directly.